Thursday, 23 December 2010

Invest in ME Statement on XMRV Research

The journal Retrovirology has recently published (20 Dec 2010) results from four different groups (Hue et al., Sato et al., Oakes et al. and Robinson et al.) [1] which dispute the association of XMRV with ME/CFS or prostate cancer and suggest evidence of possible mouse contamination of PCR evidence. Hue et al. go as far as to say that XMRV might not be a genuine human pathogen.

Until now it has been accepted by the scientific community that an infectious XMRV exists and the only debate has been whether its association with ME/CFS can be replicated or validated by other researchers.

Invest in ME feel that it is good that the papers in Retrovirology have been published for closer scrutiny by other experts in the field as there are many distinguished scientist involved on both sides of the scientific debate. We only question the motives and timing of the publication of these papers.

We expect and demand that these papers will be scrutinised as thoroughly as has been the case of the papers stating an association of XMRV and ME/CFS or prostate cancer.

Many media outlets were astonishingly quick to pick up this story from the Retrovirology journal. The BBC quoted Professor Tim Peto as saying

It is worth pointing out that Professor Peto is in the Trial Management Group of the soon to be published PACE trials, a trial which was heavily criticised before it even started by patients and most ME charities. The Trial Management Group also includes proponents of ME/CFS being a somatoform illness.

Invest in ME firmly believe that the PACE trials are bogus science and are the culmination of a decade of squandered resources from biased policies toward ME/CFS research. The folly of the PACE trials was extensively illustrated by the "Magical Medicine - How to Make an Illness Disappear" document [2] and we feel they can be discarded for any sensible discussion about ME/CFS.

The WPI have issued a press release [3] in which they state that -

"Humans cannot make antibodies to viruses related to murine leukemia viruses unless they have been exposed to virus proteins. Therefore, recent publications regarding PCR contamination do not change the conclusions of the Lombardi et al. and Lo et al. studies that concluded that patients with ME/CFS are infected with human gammaretroviruses."

The recent research studies in Retrovirology need to be viewed in context. We openly wonder about a possible coordinated establishment propaganda campaign to boost the forthcoming PACE trials publication by coordinating a number of research papers to be published simultaneously.

It is worth emphasising again that the original Science paper was extensively peer reviewed. Using the "contamination argument" not only attempts to impinge the reputation of the WPI but also the Cleveland Clinic and the National Cancer Institute as well as Science magazine - and such heavyweight researchers as Dr Harvey Alter. Contamination was carefully ruled out by Lo et al. and Lombardi et al. The peer reviewers at Science and PNAS made sure of this.

We should also remember the observations from Dr David Bell made in May this year [4] where he commented on tactics being used to hamper the WPI research. Although the establishment bias of trying to promote ME/CFS as a behavioural illness has now clearly been discredited as a ridiculous smokescreen using poor research the efforts to thwart proper science are still going on.

Amy Dockser Marcus, a Wall Street journalist who has been following ME/CFS research closely, published an article [5] on this matter. This quotes other authors of this collection of Retrovirology papers, such as Professor John Coffin and assistant professor Robert Smith, author of the commentary, as being cautious of dismissing previous studies. This does not concur with Professor Peto's remark to the BBC above in which he seemingly dismisses any link between XMRV and ME/CFS.

Medical research has historically been in denial of new ideas and advancement due to dogma and inertia from establishment forces. Doctors, for example, would still be treating patients with peptic ulcers with stress reduction techniques and lifestyle management were it not for the example of Professor Barry Marshall, who infected himself with helicobacter pylori and subsequently treated himself with antibiotics to prove causality. [6]. Without such pioneering research progress is often stunted, or discarded.

How can we make progress? Patients need to be trialling treatments under proper supervision. A sensible approach might be to establish a few well controlled clinical trials to be performed on patients who are so ill that they have practically nothing to lose by trying out treatments such as antiretrovirals, where appropriate, to determine if there is improvement in their condition. It is about time something tangible is done to help these desperate patients and to progress proper science.

To this end Invest in ME will use the The Case for Clinical Trials as a theme for the 6th Invest in ME International ME/CFS Conference on 20th May 2011 [7]. We feel it is time to effect translational biomedical research and bring the benefits of such research to patients. It is also why we are trying to establish an examination and research facility to perform translational biomedical research into ME/CFS [8].

Invest in ME have invited the UK Secretary of State for Health, the Chief Medical Officer of England, the EU Commissioner for Health and many of Europe's health ministers to the conference. We have also invited the editor of the British Medical Journal to participate in a panel discussion - no longer can the BMJ publish poorly researched editorials on ME/CFS if it refuses to attend the annual IiME international ME/CFS Conference.

In May 2011 we will welcome again the President of the WPI Mrs Annette Whittemore and the Research Director Dr Judy Mikovits to London and will willingly (once again) provide the opportunity for politicians, the media and healthcare providers and researchers to attend the conference and listen and discuss with the foremost researchers on ME/CFS.

The WPI have shown themselves to be open and willing to cooperate - quite unique qualities in scientific research from what we can see. One thing that is clear is that the WPI is focused on helping ME/CFS patients to regain their lives - an attribute which seems often to be missing from some researchers, spokespersons and establishment organisations.

The WPI research on XMRV has offered new hope to people with ME/CFS that proper science is finally being performed to provide a future for patients.

Hopefully more funding will now be directed toward biomedical research into ME/CFS to enable progress regarding this devastating disease. As Dr Harvey Alter of National Institute of Health recently said his group had ruled out contamination and if whatever his group found is not MLV related viruses then scientists must find out what it is as the disease these ME/CFS patients have carry hallmarks of a viral disease.

We concur - virology and immunology are the likely keys to finding a treatment/cure.

We hope that scientific progress will continue at a much faster pace than in the past and that politics are not once again allowed to destroy all hope for ME/CFS patients.

About Me

I am a Christian, saved by grace alone through faith alone. I have had the neuroimmune disorder ME, Myalgic Encephalomyelitis, since 1991. From North Somerset, now in N. Ireland. Please see my website for further information about ME.